Cancer is an enormous public health burden among Black and Latinx cancer survivors, and they are at risk of facing barriers to accessing cancer treatment and support in the United States. This study explored the unique challenges and experiences faced by Black and Latinx cancer survivors through the lens of their caregivers, including the specific cultural, social, and systemic factors that influence cancer survivorship experience and quality of life within these communities in the United States.

We used a qualitative descriptive design for the study, and conducted 6 focus group discussions (3 Latinx and 3 Black groups) with a total of 33 caregivers of cancer survivors, (Mean age = 63 years). Data were analyzed using inductive content analysis.

We identified 3 main themes: (1) families as (un)stressors in survivorship such as the vitality of social connections and families as unintended burden; (2) responses after diagnosis specifically whether to conceal or accept a diagnosis, and (3) experiencing health care barriers including communication gaps, biased prioritizing of care, and issues of power, trust, and need for stewardship.

The findings align with previous research, highlighting the complex interplay between cultural, familial, and healthcare factors in cancer survivorship experiences within underserved communities. The study reiterates the need for culturally tailored emotional, physical, financial, and informational support for survivors and their caregivers. Also, to improve quality of life, the study highlights a need to strengthen mental health and coping strategies, to help address psychological distress and improve resilience among survivors and their caregivers.

Patients with progressive neurologic illness still lack access to quality palliative care services. Barriers to the comprehensive provision of neuropalliative care include gaps in palliative care education. To address this barrier, a novel international model of neuropalliative care education e-learning program was launched in 2022.

This is a qualitative study on the self-reported learning outcomes and educational gains of participants of a neuropalliative care e-learning course.

Thematic analysis shows changes in the participants’ perceptions of neuropalliative care and several specific educational gains. After attending the course, participants recognized neuropalliative care as a multiprofessional and interdisciplinary effort requiring more than medical knowledge and disease-specific treatment skills. They gained understanding of the complexity of prognosis in neurological diseases, as well as ethical concepts as the basis to approach difficult decisions. Valuing the needs of patients and caregivers, as well as honest and open communication were recognized as key components of the caring process. In particular, providing emotional support and building relationships to enhance the spiritual component of care were avidly discussed as essential nonmedical treatment options.

E-learning courses are helping to close the gaps in healthcare professionals’ knowledge and skills about neuropalliative care.

Compassion is essential in palliative care; however, there is a lack of evidence of the association between this construct and patients’ dignity-related distress. The present study aimed to investigate the association between end-of-life cancer patients’ sense of dignity, the level of compassion of the healthcare professionals (HCPs) noticed and perceived by the patients, and levels of compassion that HCPs felt they had toward patients, investigating through specific attitudes and behaviors. Furthermore, the relationship between compassion and patients’ physical and psychological symptoms, such as levels of anxiety and depression, was also investigated.

The study was cross-sectional. The sample consisted of 105 end-of-life cancer patients and 40 HCPs. Patients had a Karnofsky Performance Status of 50 or lower and a life expectancy of less than 4 months. For each patient, sociodemographic data were collected, and a set of rating scales assessing compassion, dignity as well as physical and psychological symptoms were administered.

The results showed significant negative associations between patients’ perception of compassion and dignity-related distress as well as significant negative associations between patients’ perception of compassion and patients’ symptoms.

Compassion seems to be involved in diminishing dignity-related distress and alleviating physical and psychological symptoms. Other studies are needed to understand whether patients’ symptoms or whether specific HCPs’ conditions influence compassion. Exploring compassion and at the end-of-life could encourage a dignity-conserving care.

This paper focuses on the experiences of bereavement guilt among young adults bereaved by a caregiver’s cancer, examining associations with attachment style, experiential avoidance, and psychological flexibility with the aim of informing psychosocial interventions for this population.

Ninety-seven young adults (18–25 years) bereaved by a parent/guardian’s cancer completed an online survey, including measures of bereavement guilt, attachment style, experiential avoidance, and psychological flexibility. Mediation analyses explored the associations between attachment style (anxious, avoidant) and bereavement guilt, and if these associations were mediated by experiential avoidance or psychological flexibility.

Bereavement guilt was significantly positively associated with anxious, but not avoidant, attachment to the deceased; the relationship between anxious attachment and bereavement guilt was partially mediated by experiential avoidance. Bereavement guilt was also negatively associated with psychological flexibility and engagement with bereavement counseling.

Given the limited literature on cancer-related bereavement in young adulthood, this study offers important theoretical and clinical insights into factors associated with more complex aspects of grief in this population. Specifically, this work identified that anxious attachment is associated with ongoing bereavement complications in the years following the death of a caregiver to cancer, with experiential avoidance partially mediating this relationship. While further research is needed to better understand the interaction between these factors and other related constructs, such as psychological flexibility, these findings may be helpful in selecting therapeutic approaches to use with this population.

Diagnosis of amyotrophic lateral sclerosis (ALS) takes more than 1year from detection of first symptoms. The paper seeks to understand the ALS diagnostic process and adjustment from the perspective of informal caregivers.

The data stems from an interview study with 9 current and 13 bereaved informal caregivers of people with ALS in Switzerland. The interviews were analyzed using thematic analysis.

We identified 3 key themes pertaining to ALS diagnosis. In the first theme, we present the close involvement of informal caregivers in the “diagnosis journey.” Highlighted within this theme is the important role they play, which ultimately leads to diagnosis of ALS avoiding further delays. Second, we relay their perceptions on “diagnosis communication pitfalls” where they underlined empathy and planning from the part of medical professional, while communicating the terminal diagnosis of ALS. Participants’ reactions and adjustments post-ALS diagnosis are described in “the aftermath of diagnosis.” In this third theme, we highlight participants’ shock and their need to rethink overall life plans and roles in their family.

Diagnosis communication that is clear, empathetic, and adjusted to the needs of the patients as well as their caregivers is critical. More work is needed to improve diagnosis communication for ALS patients. Receiving the diagnosis of ALS leads to complete changes in life of caregivers. It is therefore necessary that medical professionals provide adequate support that allows them to plan for their future.